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enEmotional Closurehttp://www.openthemagazine.com/article/opinion/emotional-closure
<p>MR AND MRS AT, both in their eighties, moved from Pune to Mumbai to live near their only son. Two years later, Mrs AT needed hospitalisation thrice in two months, first for medical problems and then for a hip fracture surgery. During this period, they made it clear that they did not want excessive medical treatment towards the end of their lives. Mrs AT made a partial recovery and could hobble around with a walker. But three months later, her husband suddenly developed pneumonia and needed admission. Within a day, in spite of treatment, his BP crashed, kidneys stopped functioning and breathing deteriorated—medically termed multi-organ dysfunction syndrome. He was 89 and the doctors were certain that pulling him out would be a difficult task. If he did recover to the point of leaving hospital, it would be with a breathing tube (tracheostomy), a feeding tube and a catheter. The decision was made to withhold life sustaining treatment and the focus shifted to making him comfortable. He passed away a day later with his son holding his hand. One year later, Mrs AT again needed hospitalisation twice. Her uncontrollable diabetes had resulted in large skin boils needing daily dressing and a stubborn urinary infection. After the second admission, she made it clear that she did not want to go to hospital again. So the focus changed to keeping her as comfortable and pain- free as possible at home. A palliative care team helped manage her symptoms and she passed away three months later with her children and grandchildren around her. She was alert and cheerful till the last day.</p>
<p>For most elderly Indians, this is a fairy tale. In reality, people in the same situation die alone in hospitals, often on ventilators. We see patients with terminal cancer rushed into ICUs instead of being offered a peaceful natural death. In a private hospital, the costs are substantial: the hospital bills for a friend’s 85-year- old father amounted to Rs 25 lakh for the last year of life. Corporate hospitals fail to recognise that this is a major and avoidable cause for disputes. If this happens in a public hospital, the story is likely to be shorter, as limited resources lead to a brutal triage. The family is told to take the patient home and the discharge papers say: ‘Left against medical advice’. In any case, these are miserable deaths since palliative care is never involved. India has been rated as one of the worst countries in the world to die in, documented twice in <em>The Economist</em>’s Quality of Death index. This is not a matter of financial resources, since poorer countries manage better. The state of Kerala provides better palliative and end of life care in its rural areas than is available in any of the metros. Three missing elements explain this tragedy.</p>
<p>One: the lack of public awareness. Death is ‘<em>apshagun</em>’ (inauspicious), and yet there is a hunger for such conversations whenever they are opened. <em>Malayala Manorama</em> did a stellar job of naturalising death in its home state, Kerala. Can national media houses follow this lead? Our website <em>Onelittlewish.org</em> is a beginning, albeit currently only in English.</p>
<p>Two: lack of professional capacity. Indian doctors are not trained to handle such issues. No medical student gets even a couple of hours of basic orientation on handling death and dying. Palliative care is a rapidly growing post-graduate medical specialty worldwide: in India, we train only eight specialists a year. And this is not an expensive high-tech business; limiting unnecessary care often reduces costs.</p>
<p>Three: lack of legislation. This is probably the original sin. It is only now, almost 70 years after India’s Constitution was written, that the Supreme Court has recognised our constitutional right to personal autonomy in health matters.</p>
<p>The situation is very different elsewhere. Doctors broach these subjects once terminal illness is identified or in late old age after the first hospitalisation. Trained counsellors then take over and the road ahead is spelt out, unless one chooses not to be informed. A peaceful passing requires emotional closure with family and loved ones and this cannot happen without accepting the proximity of death. Palliative care professionals help to manage symptoms such as pain, depression, etcetera. The goal is to live as well and as long as possible with terminal illness. Natural death then occurs at home or in surroundings of one’s choice with minimal or no discomfort. We too need to make death ‘apshagun’ no longer.</p>
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<p><a href="http://www.openthemagazine.com/article/cover-story/life-is-beautiful-so-should-death-be" target="_blank">Life is Beautiful, So Should Death Be</a><br /><a href="http://www.openthemagazine.com/article/opinion/a-private-matter" target="_blank">A Private Matter</a></p>
<img src="http://www.openthemagazine.com/sites/default/files/styles/large/public/public%3A/Lifebeautiful4.jpg?itok=8e8Z1pKu" /><div>BY: Dr Roop Gursahani</div><div>Node Id: 24085</div>Thu, 15 Mar 2018 19:20:01 +0000vijayopen24085 at http://www.openthemagazine.comA Private Matterhttp://www.openthemagazine.com/article/opinion/a-private-matter
<p>SOMETHING HEARTWARMING has happened in legal opinion in India changing on how we can manage death and dying. In a unanimous decision, the Supreme Court has declared Advance Directive (AD) and refusal of life support (so-called ‘passive euthanasia’) lawful. It symbolises the constitutional importance of autonomy and privacy in healthcare. Central to humane medical treatment is respect for the patient as an individual, not merely as a diagnostic label. We fix a disease, but we must care for the person.</p>
<p>Nowhere is it so important to care as when a physician is called upon to manage a dying patient. In the initial years of intensive care, there was wonderment at being able to salvage lives previously held to be beyond help. We could bring back the heartbeat after it had stopped and breathe oxygen into the lungs artificially. But then with new technology came new challenges: death became redefined. It could be postponed, interfered with and, in so doing, tortured. All in the name of ‘fighting bravely’. With great power comes greater responsibility to use technology ethically and rationally. When critical care evolved into a new specialty in the 70s and 80s, the developed world realised the need for appropriate withholding or withdrawal of such medical interventions. The concept of limiting treatment was borne of the idea of using medical interventions wisely. Inevitably, if disputes arose over whether the patient had the right to refuse life support when he or she could not make the choice directly, US courts supported the decision on the basis of individual freedoms. Enabling laws and legislation for treatment limitation followed in most countries with well-developed healthcare systems. These laws evolved to protect both patients’ rights as well as the physicians’ duty imperatives. Similar discussions must happen in India to protect what is best in modern healthcare.</p>
<p>The apex court’s judgment declared unequivocally the inalienable fundamental right of privacy which cannot be undone by any legislative or executive order. This right is unconditional, and so in End of Life Care, the wishes of even an incapacitated person, if known to caregivers, must be respected. An instrument such as an AD is valuable in this. It is executed when the person can judge for himself and becomes operational when the capacity is lost at the time of treatment decisions. Since End of Life decision-making is often complex and needs discussions and negotiation, the appointment of a healthcare proxy is also necessary and can be done at the same time as the AD’s execution. In the recent historic judgment in <em>Common Cause vs The Union of India</em>, the Supreme Court ruled in favour of the right to execute such a document. It reaffirms the rights to privacy, autonomy and to a dignified dying process as enshrined in Article 21. The Judiciary has overridden the positions of the Law Commission Reports 196 and 241, and the Union Government’s reservations over the legal validity of AD.</p>
<p>We have a robust constitutional basis to the principles of End of Life Care as established by guidelines of the Indian Society of Critical Care and the Indian Association of Palliative Care 2014. However, they may be rendered unworkable in the real world in the name of safeguards. In the Aruna Shanbaug case, a High court procedure was recommended for ‘passive euthanasia’ but no one utilised this provision in the six years since the judgment. A similar situation may arise if treatment limitation principles are interpreted rigidly under the procedures laid out in the present judgment. It first needs a medical board opinion to be endorsed by another board appointed by the jurisdictional judicial magistrate of the First Class after actually seeing the patient. The judiciary needs to take inputs about ground realities from the medical profession and review existing procedures. Treatment limiting decisions are extremely common in ICUs. Safeguards can be best applied by the hospital board itself, much like Transplant Committees. The alternative draft Bill for End of Life Care by the advocacy group End of Life Care In India Task Force submitted to the Ministry of Health and the Supreme Court should also be reviewed for operationalising AD and treatment limitation.</p>
<p>We are on the threshold of progressive changes in the care of the dying and doctor-patient relationship as a whole. But there is much work left to be done over the contours of applying the Court’s landmark judgment.</p>
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<img src="http://www.openthemagazine.com/sites/default/files/styles/large/public/public%3A/Lifebeautiful2.jpg?itok=qpZIN2WN" /><div>BY: Dr RK Mani</div><div>Node Id: 24084</div>Thu, 15 Mar 2018 19:14:20 +0000vijayopen24084 at http://www.openthemagazine.com